About Me

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly,
mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.”
-- Baruch Spinoza

Sunday, November 11, 2007

Sex and Disability in the City

I had a wonderful time last night at a Barmitzvah. I talk to a lot of mums who feel so burdened by all kinds of responsibilities. We forget to offload, to just be ourselves, and come back to our daily lives with refreshed views. Clenched in the vice of duty and worry, we could, if we don't go out and live, forget who we truly are. I always think about this -- how we are supposed to be so devoted to the point of forgetting to enjoy life! Long before I knew anything about disability, I would have thought that parents with disabled children make the ultimate sacrifices, including a ditching of their very sexuality, which in essence, makes up who we are! Not only are disabled individuals perceived as asexual beings, I think a lot of parents fear that this is how they'll be viewed if they have a disabled child -- that "life is over," attitude. I urge people to check out the exhibitions the Abilities Festival put on in Toronto this fall -- couples (both with Down syndrome) with a child, beautiful photography of disabled bodies. Man, there was nothing asexual about it!

We are perceived as some kind of "heroes" who give up our time, who make extraordinary sacrifices. While it is challenging and we all have are own unique "crosses to bear," I really don't like when people paint me out to be a hero of any kind. I thank their kind words, for perhaps it is I who don't take to compliments gracefully enough, but I see devotion as something that just is -- not a full sacrifice of myself.

When Adam was first diagnosed, I fretted. I still give most of my time and days to him and his development. I have also learned to let go a little over time. I don't think it's something a parent can just do upon a diagnosis. It's something that has to be learned. One has to give themselves permission.

They say you have to put on the oxygen mask in an emergency on yourself before you put it onto your child. When I feel the pull of being a mom versus doing the things I need to do -- that purgatory of guilt -- I tell myself that I owe it to Adam. I owe him my passions, my failures, my humanity as a model for his own. I feel I would cheat him if I didn't dance the night away, fall flat on my face some days, show him who I really am. Making room for who I am perhaps allows me to make more room for him to be who he is.

3 Comments:

Likewise, for many adults, including those on the autistic spectrum, they are often given words to the effect that they must be "heroes" in "putting up" with their disability all of these years.

However, that "duty" to look after ourselves is often put far, far ahead of our own lives, and our desires, sexual or otherwise. We are told that we will not meet that person or get what we want out of life unless and until we take the "disability" and get full and absolute control over it, so that we can behave "normally", in which case, we will be able to move forward in all the passions of life.

Without being able to "behave" ourselves, we are told that the disability still has full control over us, and that, ultimately, without this control "we are are own worst enemies".

The enemy is not within; it is out there in those people who put "sacrifice" ahead of "life"; who pre-determine how each person "must" act, with no tolerance for variation (as that would set a precedent, and permit anything, at all, "to go"). Only when this external bondage is lifted, and we can "get on with our lives" without being held in bondage to the "normal" (or "sacrificial") will we be able to find out who we are and, thus, respect others for who they are.